A Love Letter to My Husband to Say, ‘Thank You’
Columnist Jennifer van Amerom reflects on married life with NMO
In the weeks between Thanksgiving and Christmas, I usually spend some time thinking about my loved ones and what they mean to me. This year, I thought I’d share a love letter to my husband of 12 years, Mike, in hopes that other neuromyelitis optica (NMO) patients might relate.
To my life partner,
I wish you knew how much your everyday gestures mean to me, whether it’s leaving me a perfect cup of tea or my favorite fruit smoothie on the counter. I love the way you reach out and gently rub my back, exactly in the spot that you somehow knew was hurting me. And you take charge of things before I realize I’m out of energy.
It’s in these moments, and there’s so many of them, when I’m filled with self-doubt. I don’t feel I deserve you. I wonder why anyone would want to share a life with someone who is forever broken because of NMO. There’s not a single day that I’m not in pain, and I’m often curled up in a ball, unable to move. I spend sleepless nights pacing the hallway.
Yet somehow, you’re still here.
I didn’t have a choice in this life with NMO, but you did. Even more astonishing, you make that choice every day, even on my bad days. This can’t be easy, because it certainly isn’t for me.
Every time you step up — going on late-night runs to the pharmacy, managing the kids when I can’t anymore, or covering me with a blanket during a nap — I fall even more in love with you. Your love gives me confidence. It makes me want to push through the pain. I know it hasn’t been easy, loving me and my disease. NMO has been cruel to both of us, so I need to thank you for enduring.
Thank you. I should say this more often, but I don’t. Sometimes I think these words are insignificant because they don’t fully express my gratitude, especially when I know how madly in love you still are with me. Having a serious illness like NMO forces me to behave in such a selfish way, so I forget to be thankful. I regrettably take you for granted sometimes.
Still, even when I feel broken, both emotionally and physically, you still love all the pieces of me. How am I this lucky to have you in my life?
I wish I could provide you with some certainty about our future together, but we both know I can’t. We don’t talk about the possibility that NMO will win, and we don’t have to. Over the years, we’ve perfected our crisis plan. We know what to do if I need medical attention. We know that you’ll have to support our daughter alone. There’s peaceful comfort in knowing what we’d do. This comes from years of battling this disease together.
I want you to know that I see you and all the ways you make my life better. I love our adventures together, but it’s in our regular, uneventful, everyday existence when I need to take a moment, like right now, and appreciate you more.
I love you.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).